Editorial: A question for doctors, not the courts

Friday

Jun 21, 2013 at 12:01 AMJun 21, 2013 at 10:14 AM

Ten-year-old Sarah Murnaghan of Pennsylvania has a new set of transplanted lungs today. She didn’t get them in the usual way, by moving to the top of the waiting list and being fortunate enough that a donation of suitable lungs came through.

Halifax Media

Ten-year-old Sarah Murnaghan of Pennsylvania has a new set of transplanted lungs today. She didn’t get them in the usual way, by moving to the top of the waiting list and being fortunate enough that a donation of suitable lungs came through.

Sarah got her new lungs after U.S. District Judge Michael Baylson ordered Health and Human Services Secretary Kathleen Sebelius to allow Sarah the same access as adults to lungs from adult donors.

That’s not the way it usually works. Because of the difficulties in fitting adult lungs into a child’s body and other medical hurdles, children younger than 12 are first in line for lungs from donors of their own age. They are second in line for lungs from adolescent donors, aged 12 to 17. Usually they receive adult lungs only if no adult awaiting transplant in the local area accepts the lungs, which is rare.

Sebelius had refused to change the rules because giving Sarah special consideration would mean other young people waiting for transplants would have to wait longer. But Sarah’s parents sued. Her family and friends launched a petition drive that gathered more than 372,000 signatures.

In ordering the “under-12 rule” set aside, Baylson cited the plaintiff’s argument that the rule “discriminates against children and serves no purpose, is arbitrary, capricious and an abuse of discretion.”

The judge did not order the transplant. But Sarah, who was critically ill because her lungs were ravaged by cystic fibrosis, was fortunate: Adult lungs were available. Doctors said the surgery was a success.

Sarah’s parents are elated. They should be.

But we think that this case should not set a legal precedent. Organ transplants, whether for children or adults, are governed by complex rules that take into account death rates among people waiting for lungs and the survival rates after transplantation. In general, lungs go to those who are sickest, and also those most likely to do well after a transplant.

Sarah’s case “is a thorny ethical decision and a complicated medical one,” Northwestern Memorial Hospital’s chief of thoracic surgery Dr. Malcolm DeCamp said. “The size of the donor and of the recipient is critical. Lungs vary in size primarily according to height, gender and age. The courts are clearly poorly equipped to adjudicate this kind of decision.”

He’s right. Transplant decisions should be driven by medical professionals, by doctors consulting with patients and their families, not by the courts. Taking these delicate medical decisions to court invites “significant chaos and inherent unfairness because access to the courts is not equal,” Alexandra Glazier, ethics committee chair of the United Network for Organ Sharing, (UNOS) told The Associated Press. “Public trust and procedural fairness demands that organ allocation policies be made in an open public process and not by urgently convened committees.”

UNOS, the nonprofit that oversees the national transplant system for the federal government, will now allow for appeals in cases like Sarah’s. Other UNOS committees will spend the next year studying possible rule changes in the way lungs are allocated to children.

One thing will not change: These decisions are excruciating, whether or not a child is involved. There’s a huge need for more donors. Too many people die waiting for lungs, kidneys, livers and hearts.

In 2012, 224 people died awaiting a lung transplant. That included eight children under age 11.

As of a week ago Friday, 30 children under 11 were waiting for new lungs.

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